We upped Peanut's Trileptal dose on Saturday, and then today. Today it is at the goal dosage finally.
KNOCK ON WOOD - since Sunday, we have not seen a single seizure. And the gagging/retching/choking/screaming she was doing at night and in the morning is gone. So perhaps it really was seizure related!
We haven't gone this long without seizures in forever. Please pray it continues!
This next part is for Cathy, Annabel's mom. You posted about her weight gain on the TPN, and I had to show you these pictures. Peanut was on TPN for 6 months or so, and the lipids caused her to gain a ton of weight. She was so bloated and fat!
10 comments:
Thank you for taking the time to let me know this is normal. It just seems her body has to work harder to breathe. They said they are cutting lipids in 1/2 for this next week and also the dextrose in the TPN. Maybe if I wasn't trying to be a mom at 53 I would be able to handle the weight.
I am so hopeful that Peanut will stay without seizures. Sometimes I wonder why I whine about our issue when many of ya'll deal with seizures. Thank you for the pics.
Look at that chunky monkey!! Knocking on wood as I say maybe this drug will work!
Praying this reprieve continues for a long time! This would be so awesome! Feeling hopeful for you and Peanut! Love and Hugs!!!
That is great news! I really do hope that the meds are working and she can be seizure free with them.
Mags gained a bunch of weight on the TPN and lipids as well. Not only from being pumped full of fat but all the fluid they say they will retain from it.
I'm sending out good thoughts and prayers that the "no seizure" thing continues.
I do believe I can safely say that the dietician hates Tuesday when I call and say I have a copy of her labs. Her liver enzymes don't look good and her weight is up this much. But I call because I don't like what I see. When I spoke with the GI last week (when we drove 2 hrs. each way for no results) I spoke of the weight gain. (He is a skinny guy anyway) and he told me that the extra weight gain was like having a penny in your pocket, that it will come in handy one day. Meaning when she and if she goes off TPN she will loose the extra weight. I wanted to slap this guy and say "you aren't the one struggling to breathe with the additional weight. ARGH!!!!!!!!!!
I love the pics of Peanut on the TPN, she is precious no matter fuller or not, but it was too much too fast. Thank you again for sharing this with me.
Ah I do hope shestays sezure free for a while now - you could all do with a rest from them.
Tia
Ugh. Seizures.
Very nice post...
Thank you for the post..Transcription Medical
praying that she stays seizure free, woohoo.
Those pics are so cute.
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